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Most women with breast cancer do not talk with clinicians about sexual dysfunction that occurs during or after cancer treatment, according to survey results published in PLoS ONE.
Instead, these patients report using techniques that they discovered themselves or that were recommended to them by their peers.
These findings come from a survey of 501 women with breast cancer who were recruited from the Breastcancer.org online forum community.
The respondents had been diagnosed with stage I (35%), II (38%), III (17%), or IV (11%) breast cancer. The median time from breast cancer diagnosis to survey completion was 10 years (range, <1-43 years).
The respondents’ median age at survey completion was 53 (range, 30-79) years. Most respondents said they were currently sexually active (70.4%), had a partner (64.6%), and were heterosexual (68.8%). However, some respondents did not provide information about their partner status (28.5%) or sexual orientation (28.3%)
About a quarter of respondents (25.9%) said they talked to a clinician about their concerns regarding the effects of breast cancer treatment on sexual function. However, most (57.2%) said they never talked to their clinician about sexual side effects or ways to manage sexual dysfunction.
Thirty-five percent of respondents said they used a self-educated technique or one recommended by someone other than a clinician to manage sex-related challenges during and/or after breast cancer treatment.
Of the 174 patients who used techniques not recommended by a clinician, 44.2% developed a technique themselves and 31.0% collaborated with partners to find a solution. Other sources of information on techniques included a peer with breast cancer (21.2%), the internet (21.2%), family members or friends (7.4%), and television or the radio (1.1%).
When patients rated the effectiveness of these techniques, 10.9% said the techniques were ineffective, 43.6% said they were slightly effective, and 45.9% said the techniques were moderately or more effective when used in addition to or instead of standard therapies.
A total of 149 patients shared self-educated or peer-recommended techniques with others, including 32.2% who shared techniques with their health care providers, 26.1% who shared with other breast cancer patients, and 21.4% who shared on a website, blog, or social network.
“To fully understand and share patients’ innovative techniques for coping with these symptoms, clinicians should foster open discussion about the potential for dysfunction and treatment of these symptoms, as well as avenues of peer-supported discussion to promote coping, self-education, and discovery,” the researchers concluded.
Reference
von Hippel C, Dibble KE, Rosenberg SM, Bollman-Jenkins M, Weiss M, Partridge AH. Taking their wellbeing into their own hands: Self-educated and peer-recommended techniques used by women with breast cancer to improve sexual functioning during treatment and in survivorship. PLoS ONE. Published online November 15, 2023. doi:10.1371/journal.pone.0293298
This article originally appeared on Cancer Therapy Advisor
